Ten things people say to people with Fibromyalgia

[wedel]

Re: Ten things ppl say

1) you just need a little pill for depression

2) fibromyalgia isnt a real illness and i know because my brother is a doctor (said about me during a chruch meeting by a little old lady when a friend mentioned i needed prayer and support)

3) try a new mattress

4) if you wore more supportive shoes your hips wouldnt hurt

5) get a better pillow

now for the positive, because those matter too & my husband is a true gem...

6) let me wash your hair for you

7) i'm so sorry you hurt

8) you are beautiful to me

9) kids help your momma

10) can i rub your feet?

 

[diamond]

Re: Ten things ppl say

AHHH blessings to you and your lovely husband.

 

[terbaer]

Re: Ten things ppl say

My husband has been my rock! He has always been the work to play kind of guy. He was never negative about my diseases, but just didn't really get it. When it got to the point that I couldn't work anymore, he said that I had been the major breadwinner long enough and that I did my time. We'd make it somehow with me not working.

He tells me to go nap before we have something to do in the evenings because he knows I'll crash if I don't. I try hard to get out and still have fun, it's just much less than it used to be.

He works out of town Monday through Thursdays most weeks so we text a lot. He checks in on me to see how my days are going. I get upset when I am having a bad week and can't even keep the house up. He just reassures me that he'll take care of it when he gets home and not let it stress me out.

A few weeks ago, I described to him how I struggle with food. I have little appetite and the idea of preparing food overwhelms me. I can't think of what to cook. When I come up with what to cook, it is offputting for some reason. I know it's a fibro thing. If someone makes a meal or I go to a restaurant, I can eat. Most days I am lucky to eat two meals a day. He told me that we'll just start planning meals on the weekends so that my daughter and I can just warm something up. (We haven't done it yet, but he now comes out to the living room with sliced cheese, meat and crackers at times, whereas before, I just wouldn't eat and he and my daughter would find something to eat.)

Love that man! <3

 

[Eyesup]

Re: Ten things ppl say

Yup, even though I struggled ten years ago I practiced that just keep doing this and that, by then I had to have a system but my home looked like I really had my s*** together. But I was so busy struggling to be perfect I not only couldn't have bothered to tell someone how to run their homes but my very tiered OCD brain was enviouse of their ability to let go and live life instead of obsessing about laundry. Laundry was actually the first thing I gave up on : )

 

[terbaer]

Re: Ten things ppl say

I completely understand Eyesup. My mom raised me to have the house in order, especially if company is coming over. I have learned to let go. The house isn't always perfect, far from it. I try to save my spoons especially if I have something planned in the coming days. No one has died over me not keeping up on the house, or the laundry. It all gets done in time. I find if it really gets to me, I wait until I'm having a good day and throw a movie on. Watch for 20 minutes or so, work, watch for 20 minutes or so, work. I do this until I'm content and I get the worst of it done. Last week was a first in a couple of months that I had several consistent good days. I got the kitchen cleaned, a couple of things hung on the wall behind the stove (so cool looking!), threw 3 bags of papers out to be burned (2004 through about 2012 paper copies of bills and things). They had been piling up on the file cabinet for years! And cleared out the family room to put in an entertainment center that we got for free from Facebook. Hubby helped me with the heavy stuff.

Do what you can when you are able. Let go when you can't. Purge the negative from your life.....Enjoy life cuz you only get one chance with it and LIVE!

 

[Icebear]

The most hated words for me are:
- you should go out more often, you need fresh air
- you need more exsercise, you should go for a walk more often

Yeah, great. If fresh air and walking makes me feel better, how some people can't understand that I really would have done a loooot of those things since years ago.

 

[maggiesmom2005]

Yes it happens every day from family, friends, and other acquaintances.

 

[dancingwithfibro]

- i don't believe in fibromyalgia
- you have to try everything and anything that could possibly help you (this is complete bs, not only is it physically impossible to try everything, we'd go broke homeless and crazy from believing every claim)
- you should try _______ (insert claim)
- you can't live like this, this isn't living (ouch)
- i promise to heal you but you must repent (my first and last attempt to see a religious healer)
- it's because you're depressed
- if you're truly sick, how are you able to ____ (insert activity that i was able to do on a very good hour)

 

[dancingwithfibro]

ahhh i love wedel's idea of the positives

-do you want me to make you juice? (my loving boyfriend)
-i always want to ask you about your illness, but i'm not sure if it's something you want to talk about (a dear girlfriend)
-please tell me if you want me to stop talking about my work stuff, i don't know if i sound annoying (a friend in the business that i worked so hard to pursue but had to stop)
-i'm going to do everything i can to cure this (my naive hopeful mother, i appreciate her enthusiasm)
-i will pay for you to see the best doctors (my generous sisters)
-please let me know if there's anything i can do to help (my brother in law and friend - from them i know it's genuine)

 

[arachnerainbow]

Re: Ten things ppl say

Let's see, I haven't been at this as long and may not have 10...

1. Small changes in diet can produce large changes in health
2. If you would just stop / start eating {fill in with a type of food} you wouldn't have fibromyalgia (a more direct version of #1)
3. I can't accept fibromyalgia
4. You've always been too sensitive
5. You are making this up to be manipulative
6. Try harder

I work with a few ex-nurses, and now I can't stand when someone says, "Oh, you're just not eating healthy enough! Here, try eating [insert latest fad diet here]!" I also hear a lot of "You need to cleanse your body, and remove all of the toxins in your body!"

 

[remnant]

It can really get at a sick patient, isn't it, when people make unsolicited comments. I have been afflicted in the past but I didn't take offence. Most people operate from the angle of giving the patient moral support without offerring the wherewithal. But it is good that they make a comment at all because it shows, they are concerned, that at least they care. I have no problem with most of the comments you have listed since they are done with goodwill. The worst thing that a fibromyalgia patient or any other patient for that matter can undergo is indifference.

 

[diamond]

So 'your making this up to be manipulative' or 'try harder' or' you've always been too sensitive' shows concern???

I don't think so...i would rather hear nothing!

 

[Forgetmenot]

There's a group of women doing cardio on the green out the back of me.i feel so bad watching all these mums getting fit.
I'm on a diet but it's so slow as I can't run round the fields .some have asked me if I'm going to join the group,it always make me feel like there saying hay your fat u should be doing this.

 

[diamond]

Ah Forgetmenot that's tough...right under your nose. If they knew your fight with fibro they would understand but its so invisible and from your posts it strikes me you present as pretty ok as best you can to others.

Stick with the diet...it is slower because we are less active but just think in 6 months you will have shifted some pounds and maybe feel a bit better about yourself from the weight perspective.

 

[arachnerainbow]

I had to inform a colleague today that I have fibromyalgia. First thing she said was, "They say the best treatment for that is to exercise! You just need to exercise more, and you'll be fine!"

Yeah, because it's that simple...